NOVEMBER 20, 2013

Another really long and rewarding day. Today was fabulous in the sense that there was a nice mix of adults and kids! I also learned a valuable lesson in that I enjoy working with both populations but I can be more myself with kids. There is just something about being silly to make them comfortable and open up that I have always cherished. But the adults here have touched my heart. They are so kind and appreciative.

Working with kids here comes with more challenges than I have ever faced in any environment in the U.S. Part of it is due to the lack of resources, another part is due to the lack of education of the professionals, and part of it is due to the socio-economic class of the family and the “benefits” they can gain if they have a child with a hearing loss.

Here are some patient stories that can show you what I mean:

A) A little girl, aged 5, came in today. Her mom has brought her to different doctors in the hope of getting a diagnosis of what is wrong with her child – and she will do anything. This little girl has frequent fainting spells. She will lose consciousness for up to two hours and her mom will have to rush her to the hospital so the daughter can get oxygen. The mom has quit her job (now there is one less income) so that she can be home and around for when her daughter passes out and needs to go to the ER. The pediatrician suggested that the mom cut her hair. Why? Because the little girls’ brain is probably not getting enough oxygen from her hair being tied to tight in a pony-tail. Her mom cut off her long hair and the fainting spells continued. She came to the clinic in hopes of an answer and a diagnosis. Her hearing is normal – we referred for a neurological work-up. The family will have to travel to Manaus in order to have that appointment, which is no easy feat.

B) A little boy, aged 12, came in today. I tested his hearing and got no response in the mid to high frequencies of the left and moderately-severe to profound in the right. His SRT was normal in the right and moderate in the left. He also could answer questions spoken at a soft conversational level (Brazilians speak so softly). Upon counseling with the mom and asking him questions, I learned that he gets severe headaches. When he gets headaches (on the left side of his head) his nose will bleed too. He experiences vertigo when exerting himself, described oscillopsia to me, and unilateral pulsatile tinnitus. His mom took him to the ENT who refused to see him because 1) nothing was “wrong” with him and 2) he needed an audio first. He had head trauma when he was a baby and a recent cranial x-ray, which showed nothing to be wrong. We redid the audio and got normal in the right and moderate in the left. We counseled mom and explained he needed a neurological work-up and an MRI. We asked for him to come back on Monday so we could retest his hearing.

C) A little girl, aged 11 – doing well in school but doesn’t talk or hear. Doesn’t know Libres (Brazilian Sign Lang.) and mom communicates with her via talking. Her test was mild-moderate in the right and profound with no responses in the mid-high frequencies in the left. Another SRT no match. SRT came in at 70 in the left and 10 in the right. After testing I was obtaining more information from mom when the daughter commented on something her mother said. No lip-reading just hearing what her mom said and adding to it. Oy. Put her back in the booth with a different tester and the results aren’t much better. SRT however, goes down to 55 in the left and pure tones are obtained in the moderately-severe range. She’s coming back again later this week. We also learned that mom would get an extra income if her daughter is diagnosed with a disability.

These cases were trying and informative. It is SO FRUSTRATING that the doctors here don’t seem to have the education, skills, or experience to help a child. For little girl A, I could come up with some possibilities based off of the case history and obtain an even better idea with WebMd (not that I fully trust that site, but it’s better than suggesting mom cuts off all of her hair). I wish that this city – a city of 120,000 people (it’s 120x bigger than Montgomery, clearly my first impression of it being very small was wrong) had the medical resources that the community needs.

O and a little “fun fact” I learned: the doctors all went on strike because they aren’t getting paid…